A year ago, Melissa was diagnosed with Endometriosis (at 37 years old), but her symptoms became noticeable in her 20s. It took a decade to get answers…

Melissa’s Journey:   I first noticed that something was wrong when I was in my mid 20’s. I would have extreme pain in my lower back, lots of gas, and lots of pain when going to the bathroom. I noticed that a week before my periods it would burn when I peed and that would last until a week after my period (total of 3 weeks). I also dealt with bouts of constipation and diarrhea.

I brought this up to my OB-GYN at the time and he told me that my bathroom issues had nothing to do with my period and recommended that I see a a urinary specialist. I did and they said that I most likely had irritable bowel syndrome. The medications that they put me on did nothing to alleviate my symptoms so I stopped seeking treatment. I still felt like it had to do with my period, but I didn’t want to bring it up to my doctor again so I stopped treatment all together.

When I was 30, my husband and I started trying to have a baby, but were unsuccessful. After a year of trying I brought it up to my OB-GYN. He told me that I might have Endometriosis. I had an ultrasound done, but was advised that I didn’t have it.

We started doing other tests and treatments for the infertility, but I was told that everything looked good with me and my husbands tests and that we should be able to conceive and was advised to keep trying. Seven years later still no baby. I was in a car accident and had a cat scan in the hospital where they discovered that I had a massive cyst on one of my ovaries. They suggested that I follow up with my OB -GYN. I went to another OB-GYN as I stopped seeing the doctor that I saw before because I felt that he had been unhelpful. The new OB-GYN scheduled an ultra sound but there was a wait of about two months for the test to be done.

In the meantime, I went to a fertility specialist that I was referred to. After tests they found that I had very low egg quality. They suggested that I might have Endometriosis, but I told them I didn’t have it because of the earlier tests. They did a test on my ovaries and the fallopian tubes were blocked with scar tissue. They did an ultrasound and saw massive scarring and the cyst on my ovary that needed to be removed so we scheduled a surgery.

My periods at this time were lasting two to three weeks at a time and I had to change my tampon at least every hour.

It felt like I was slowly bleeding to death.

A few days before my surgery was scheduled I went to the emergency room because I was in a lot of pain, had trouble staying awake for longer than a half hour at a time and had a low grade fever. They discovered that I had an infection caused by the cyst on my ovary. They ran an ultrasound and determined that I had stage four Endometriosis. They rushed me to emergency surgery because the endometrioma cyst was filled with infected blood and they were worried that if it popped then I could become septic. They were also worried about my appendix because it was stuck to the cyst on my ovary.

After my surgery the surgeon expressed frustration to my husband, he asked my husband why I hadn’t received treatment for my Endometriosis before it had gotten so bad. The next day when I saw the surgeon he explained to me that I did have Endometriosis stage four. He explained that the cyst had grown to the size of a beach ball and he couldn’t save my ovary. He stated that I had lesions and scars everywhere and that it took him over an hour to unstick my organs from the Sticky web created by my Endometriosis. He told me that I needed to get treatment for my condition right away.

That day I cried for several hours in the hospital. I felt angry that my original OB-GYN had told me that I didn’t have Endometriosis when I did. I felt disappointed in myself for letting things go when I was told that my period had nothing to do with the symptoms that I was experiencing. I was heartbroken that my dreams of having a baby with my husband wouldn’t happen. I couldn’t afford the costs of a donor egg through the fertility clinic or adoption costs. Last I felt relief that I finally had answers after years of being in the dark.

When I went to my OB GYN appointment last October, he advised that I could either live with the pain or have a full hysterectomy. Living with the pain wasn’t an option as it had become unbearable and hard for me to work. I knew from research that Excision was an option, however, none of the experts who perform that type of surgery live in my state or are covered by my insurance. 

I decided to try the Hysterectomy first to see if that would help with my pain. I had my Hysterectomy on December 1st. I feel that it has helped with some of my pain, however, it’s hard for me to completely tell as I am still recovering from the surgery. I am going through menopause symptoms, hot flashes and mood swings that come and go, so I have been placed on an Estrogen patch to help with those symptoms.

Words of Advice:  If you know that something is wrong with your period and the symptoms that you are experiencing, be persistent. Don’t give up if doctors tell you that your symptoms can’t be because of your period if you know that it is.

If you would like to talk to Melissa about her Endometriosis journey or would like some advice, she’d love to hear from you.

I want to send a special Thank You out to Melissa for being brave enough to share her journey with us today!!  We all hope that you heal well from your recent surgery, and have no recurrent Endo symptoms. Please keep us posted. ❤    Yours, Lisa.

And if YOU would like to share your story,  I would love to share it on our blog.  The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.

Yours, Lisa.